Cancerversaries and other oddities.

Home but can’t sleep again. Been in the hospital all week after not being able to stay awake, ironically. A Xanax and a Temazapam or some other chemical foolishness and here I am, downstairs on the keyboard.

This night, ideally, is one made for a joint burning low, feet buried in the sand of a midnight beach somewhere as the roach burns down and you feel the drug begin to pull at your soul and start the magic, listening to invisible waves crashing and the whisper of the water pulling back into the unknown.

Funny thing is I always wrote better hopped up on this chemical pharmaceutical garbage than the organic stuff. Listening to the 60’s on 6 channel and wishing I was in another time and place, that I could trade all this for a little shackish sort of thing on a beach somewhere 50 or 60 years ago with a surfboard, a little radio you had to smack a few times to get some real music instead of this modern fucking garbage, the musical pollution we suffer today.  Some good weed and all of these crosses on my back gone and just … waves, man.  Waves forever. Serenity, something I can’t fathom anymore. This battle’s been too hard, the meaning’s lost.

Can you see it, even if just for a second?  Smell the cloying scent of the grass, the taste lingering on your tongue as some Manfred Mann plays in the background, the smell of someone cooking down the boardwalk? Are you there with me, silently, the briny smell off the sand wafting by? No more cancer. No more anything. Just peace.

If wishes were fishes, I think the saying goes?

As of last week I’ve been fighting this battle for five years.  Five fucking years, man (that sounds cooler, btw, if you do it in Jeremy Pivin’s voice from Grosse Point Blank). I’m scarred, a shadow of my former self in so many ways besides simply the physical … 185 pounds or something ridiculous this week at PSL. What did I weight a few years ago, an obese-ish 250? There goes that problem at least, sucked into 2017 along with 5 or so shattered vertebrae, 6″ of my colon and who remembers what else.

The clinical trial, my CAR-T salvation, was a failure.  Did I post that here?  I think I’m still in shock about that. My numbers went up.  All that “fun” and money and time for nothing. I even had a woman visit while out there who had just gone through it, same flavor of Myeloma as me, 100% gone. Me?  Numbers go up. I don’t know if it was my cancer, or they fucked the t-cells up, or having floaters and travel nurses watching me and screwing up, who knows. Not much point in trying to find blame. It’s over, it failed. Just like the rest of the treatments.

Oh man. Four Tops doing “I Can’t Help Myself.” Swoon. Just something about good music in the darkness.

I have to get up at some ungodly hour tomorrow morning to meet my oncologist to sign off on the next treatment.  Carfilzomib, here we come. Guess this better work since I think we’ve been through about everything else except another transplant.

Blech, Beatles and I’m outta skips for an hour.  Damnit.

I was talking to a psychiatrist this morning, real strong German accent. Gorgeous. Amy asked if she blew me, and it being the third time I’d fielded that question today from her about someone female I just gave up and said sure hon, if it makes you feel better. If wishes were fishes indeed. Anyways, we talked, I cried as usual. She had some cool things to say and was willing to work with Amy and I, and Ariana as well. She apparently  has a background in pediatrics as well. She talked to me about finding the MEANING in this battle, in this consummation of who I was, really. I’ll have to ponder that.

Wish I could ponder it with a joint burning. Reference above.

And to Liz, thanks for the care and the spirit. It may be a day job but I enjoyed our talks and from a scary hospital bed a friend, much less one who’s seen as much as I think you have, is rare indeed. My humble thanks.

I feel like this is oversharing tonight, too much honestly. I just padded down here and the page beckoned.  It does that sometimes, pulls me in, sucks me in, makes me visualize Ariana reading this stuff someday printed in some archaic PDF I’ve left instructions to be made. Wonder if she’ll be able to reach across the years and see me here tonight in the darkness while she slept obliviously above me, know how hard, how fucking hard, her daddy fought for another day with her. See herself on that beach with me, maybe, not a care in the world, just a dad and daughter burning one to the sunset Gods and the never-ending waves in the darkness.

Jesus … and we end with the Sound of Silence, one of my all-time favs. Don’t tell me that’s not motherfucking kismet, man. My writing career, my life in a way. Words that resonate, each one, haunting, beautiful.

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence
In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence
And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence
Fools, said I, you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you
But my words, like silent raindrops fell
And echoed in the wells of silence
And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, the words of the prophets are written on the subway walls
And tenement halls
And whispered in the sounds of silence

 

Goodnight.

Strange.

I’m still waiting to hear from Dr. Berdeja and the folks at Sarah Cannon about my initial results. It’s tiring, emotionally. Further, since the procedure I’ve had some serious new pain in my shoulders, hips and calves that the painkillers I have aren’t making a dent in and is proving to be poor company to the scanxiety scratching and snarling at the door.

I talked to Megan the Wonder-PA about this and she suggested, after we tested various motions, that it was muscular. Which is possible, although I have been walking a ton lately (for me) with the family and by now I would have expected the muscles to start responding.  It’s probably time to make good on my promise to “someday” try yoga.

Our dog, Trixie, has the right idea on our walks. You’ll be walking and suddenly stopped involuntarily to look back and see she’s laying in the grass in the shade. Just like me for 47+ years I’m pretty sure she’s thinking the same thing I am: “fuck this shit.”

But, it’s important, and I’ve never done stuff like this. Plus it’s family time, something new to do after dinner besides just flipping on the brainrot box.

There’s something off with my eyesight too … I read every night with my trusty Kindle PaperWhite and for the last several months at a certain distance I get double-vision unless I close one eye. Either one. Bizarre.

If you don’t mind a quick digression, I figured out a new item on my bucket list. If this clinical trial really is successful like it has been for some (complete remissions), I want this port removed from my chest. It doesn’t bother me in a pain sense or anything, but every time I touch it it freaks me out and reminds me that I have cancer. I’m already GMO, which is troubling when you really stop and think about it; let’s take the spigot out of my chest though, k?

I *think* I have things balanced with the family again, but then again I’ve thought that so many times in my life I’ve lost count. The whole thing is hurtful, and shameful, and about 1,001 other descriptive terms that almost but never quite capture it all. For example their constant bashing of my wife and doing things I’ve told them are putting my marriage at risk (sending her shitty emails, texts, badmouthing her, etc.) while I’m trying desperately to fix it. And then they push me to get divorced.

I mean there’s a genius idea. So the terminal cancer patient is supposed to get rid of the only person he even has a remote chance of romantic love with thanks to this disease (and I do try to be hopeful about that because that’s what Dex took from us), someone who cared enough to be my caregiver for the last five years through the horrors the Dex put us through even while she HATED me, truly hated me.  So get rid of any hope of intimacy now that I finally am starting to understand relationships, myself and how to treat people with kindness and love, and my caregiver.  Hell I can’t even get my socks on in the morning most days due to the pain without her help.

Oh and as an added bonus, I can lose half of whatever time I have left with my daughter, the ONLY thing that matters to me on this planet and the only reason I’m still here. I would lose my house, my baby’s house. Where she learned to ride a bike, and we laughed and cried together and she walked to school everyday with her mother.

But no, it’s their way or the highway. I seriously should have been a police negotiator or similar. Somehow I end up in the middle of everyone elses’ problems which I then have to clean up OR ELSE. Fucking family businesses.

Yes, I can leave. However I’d be giving up a salary large enough to allow my wife not to work and raise our daughter while she studies to become a nurse (she just got into a very prestigious nursing program here), true “Cadillac” insurance which when you are running up a million a year or so is somewhat important, including for your daughter (Ari was born with a cleft lip and palate).  And instead of spending whatever time I have left just trying to build some memories with my daughter and see if I can fix this broken disaster of a marriage (and my family too, because I thought it would be nice to see if I could break through 47 years of bullshit and make a real attempt at having one), I’d spend it trying to find a job that is going to be OK with me taking off for five weeks at a time to do stuff like this clinical trial I just did?  Or to doctor’s appointments every week? Not happening.

Here I eat shit, but at least I don’t have to worry about the serious stuff. I wish I felt like I had another option but the stress of cancer is enough  — I’ve been at my limit for so long I barely remember what it feels like to not take an anti-anxiety drug and to just feel relaxed.  The way I felt scuba diving, basically. Stress-free, just floating, no phones or email or toxic people incapable of empathy. I think that’s why I like being a night-owl so much. I can pop my medicine, grab a glass of frozen fruit (my nighttime snack) and my Kindle, and just lay down (the only position that doesn’t hurt) and read, clear my mind of all the crap. Unfortunately there’s always another day coming and lately, thanks to the clinical trial, all the travel, the family drama, etc., they’ve been tough.  I’m still here fighting, but they’ve been tough.

But it’s cleared up for another day, at least.  The family drama, that is.  Congratulations, Rich, here’s another bottle of Xanax.